Brain Tumors and Fear

I really thought I’d be much more terrorized by the words Brain Tumors, but I guess since they were there, and I was still alive, that took some of the fear away.  I simply cannot believe the amounts and types of medications I am on.

I have to take anti-seizure meds, now, and the Decadron keeps the swelling at bay.  I can type much better with my left hand, now, although it’s still not up to par. 

I had a really hard time getting to sleep last night because of the leg pain.  Still not quite ready to use those heavy narcotic patches, so I took a Naprosyn, and that helped me at least get to sleep.  But I was awake at six AM, because the pain was back.  But that’s ok… I started working early.

It’s not as easy to work as I had anticipated.  But I definitely can do it.  It’s just I have to be more diligent about proof-reading things before sending them out.  And, double check when I make system changes.  It’s probably for the best, all these safety measures. J

I swear, if I wasn’t due for a radiation treatment today, I would have taken a nap around 1PM.  Oh, and you know something terribly dangerous?  Dunkin Donuts opened a shop just down the street.  I made my poor sisters do a donut run this morning.  Like that’s a healthy meal!  But they surely were good!  Yes, I had two.  Bad, bad, cancer girl!

You should see all the jewelry I am wearing today…. Disco ball earrings and bracelet, and my very favorite ring, rainbow moonstone and onyx.  I have sworn to wear copious amounts of jewelry from now until the end… for what was I waiting?

Did My Camptosar

Happily I was able to have my camptosar infusion today, although with the bronchitis and asthma flare up, it's left me a lot more lethargic than usual.  I got my four Xeloda pills down with my dinner.  They are always a joy. :)

I saw my Primary Care yesterday, and he put me on some doxycyline because my sputum was starting to become colorful, and we just can't afford a bacterial pneumonia.  Better to be safe than dead, I say. :D

Of course, tonight will see the Dreaded Decadron Insomnia, but I have books to read, and I reloaded Diablo II, so I can play that for a bit. 

Finally confessed my self-proclaimed "behavioural issue" with Dr. Ramaswamy.  I told him that I have major problems knowing when to complain about symptomatic issues.  It's really, really a difficult issue for me.  Mostly, I told him, I feel like a whiner because that's how I was brought up between my ever-stoic parents and the even more stoic nuns.  He told me to call him if there was any doubt in my mind; any niggle of suspicion that something isn't right.  If we can just deal with it over the phone, then that is what we will do.  He listened to me, and he had an answer for me that makes sense, and so I shall try very hard to stick with this plan.  Dr. Ramaswamy is truly the best.

He says, too, that the swelling of my ankle and foot looks alot better than it did in the hospital, and that the INR rates are very challenging on me because of my chemo drugs, and being on prednisone at the moment.  So we're sticking to Monday and Thursday blood tests.  He did say he was going to have his assistant contact my insurance company and ask about home testing for PT/INR's.  I would do that in a heartbeat.

So, you know, I'm not feeling great, but I'm not back in the hospital, and THAT makes me happy as a clam.  And on that note, I think it's time to hit the hookah.

Love to all, peace on Earth and hugs all 'round!

Never SAY You are Lucky

I got home from my chemo today to find NUMEROUS letters from my insurance company telling me in several pages of gibberish that they have denied my claims on my chemo treatments.  They are telling me I now owe my oncologist just over $28,000.  Um, yeah.

So, I called them and they said the data my oncologist had provided was not enough.  They needed more justification.  They decided this back on my first treatment in August, but just now decided to let ME know.    Well, if they needed more information, why didn't they contact my doctor?  Oh, not their job!  How odd, I could have SWORN it WAS their job.  But, hey, they don't want to pay that $28,000 either, nor $4040 for any additional chemos.

And I ask myself.  WHY do I have medical insurance if they don't cover crap I need to stay alive.  Or get some sleep.  But note the lack of question marks there... it's all rhetorical.  They don't give a flying rat's ass.

Well, I'll be sure to call my oncologist's office tomorrow, because if my insurance is not covering it, we're going to have to stop the one treatment regimen that was actually saving my life.  I will not put my family in jeopardy and debt.  Granted, I'm sure this will all be resolved once I talk to the Oncologist.  HIM I have faith in.

I'm sure it would all look less dire in the morning, after a good night's sleep, but WAIT!  It's the Dreaded Decadron Insomnia night, for which they denied me a good night's sleep.  Alas.

Instead, I'm sure I'll be even more of a sarcastic bitch in the morning.  Pray for whomever answers the phone at my oncologist's office.

AC's Back On

And the reason this is?  We want to sleep.  It was just not cooling down enough last night, but I wasn't about to go around the house at 2AM shutting windows, so I didn't turn the Air Conditioning back on until this morning.  Oh, and yes, it was a bit warm today. :)


Jane and Nancy have soccer tomorrow, so Cathy and I are going to do something in the crock pot.  I got the recipe from "Not Your Mother's Slow Cooker Cookbook."  A rather unwieldy title, but it does have some freaking awesome recipes.  Any book that includes SEVERAL recipes with Hominy has GOT to be good! ;)


I can't remember exactly what the recipe was but it definitely involved turkey smoked sausage and a jar of good salsa.  We're going to slap it over whole-wheat pasta; whichever type we have in the pantry is fine.


Today, I decided to get up and put on my compression socks.  Holy carp, what a workout.  I guess they wouldn't work well if they were not a job to don.  Did they work?  The jury is out, only because I didn't put them on right out of bed. I think my ankles had already started swelling before I put them on my lotion-slathered feet.  Don't forget, I'm still trying to stave off the nasty Hand-Foot Syndrome from my chemo.  


On the agenda for this week?  Monday, a plethora of blood tests; my PT/INR, and some exciting pre-chemo checks...CBC, platelets with differentials and something called a D-Dimer to check my clottiness, so to speak.  Thankfully there is no test to check my snottiness.  I think the results might be pretty fascinating, though, if there were.


Then, Tuesday, it's Camptosar infusion time, followed by the start up of my week of Xeloda, and of course, the Dreaded Decadron Insomnia.  After that, the remainder of the week will be filled with me trying not to be nauseated.  Although, on Thursday, it'll be back to the phlebotamist for another PT/INR.  


But on the happy side, my sisters and I will be attending BlizzCon, virtually of course.  Wouldn't want to barf all over an actual convention, and I think the airlines would charge me a fortune to pack up my scooter, Darth Vader (my oxygen concentrator), and my CPAP.  


And now, it's time to take my night time bevy of pills and read a bit before I head off to slumber land.  I hope you all have a great upcoming week full of peace, sleep, and much happiness.

Hell's Bells!

Ok, I had turned off the Air Conditioner last week, when we were experiencing high 70's through high 80's weather and it was great, but this week, we're back to high 90's again.  This is actually normal for us here in the Phoenix metropolitan (dang, that word is a pain to type!) area for this time of year. 

If you notice on my Weather Channel widget, our lows are great; tonight we'll hit 64... blanket weather! ;)  So, now that the sun is long past being down, all my windows and doors are open and the fans and cross currents are bringing that cooler air into the house.  And it's LOVELY!

Jane says she heard our Great Horned Owls last night, so I hope I get a chance to hear them soon.  Our bats were back again this evening as we were all out enjoying the sunset and the cooler temperatures.

Went and had my PT/INR today, since Dr. R has changed my schedule from Monday and Friday to Monday and Thursday.  Had a chat with my case worker from my insurance company, wondering WHY this time, they wouldn't cover the Coumadin Clinic.  She's going to find out.  Seems my insurance isn't covering quite a few things these days, not the least of which is the only sleep aid that I, as a person with advanced lung disease, can actually use.

Yes, I broke down and asked Dr. R for a sleeping pill to use on my Dreaded Decadron Insomnia nights.  He prescribed Rozerem, which doesn't have a sedative effect, which would be a bad thing for a person with lung disease and sleep apnea.  But my insurance company said "prescribe Ambien" to which my doc said... diplomatically... "NO!"

Oh sure, I could spring for it myself, but for two nights in a month, they can bite me... I'll just stay up all night.  It's not cheap, by the way.  And frankly, I have other, much more important, priorities on my finances right now.  But, you know, I'm freaking sick of non-medically trained bureaucrats (dang, that's even harder to type!) telling MY DOCTOR how to prescribe medicine, when they don't know crap about me as a patient.  Yeah, I'm perturbed... which is nicer than saying this pisses me off royally.  Probably because I'm sleep-deprived.  Alas.

Still, all in all, life as I know it is fantastic, beaurocracy-ridden insurance companies notwithstanding, and so, I have a smile on my face, a song in my heart and a glass of red wine at my side.  I have a huge family that loves me to bits, friends that give me shoulders galore, and chihuahuas that provide unquestioning adoration.  For what more could one wish?  A freaking good night's sleep on Dreaded Decadron Insomnia nights!!!!!

And could I also ask to be rid of this silly twitch in my left eye?

Love to all. :)

One Tired Puppy

The ever-popular post-decadron insomnia reared its ugly head last night.  I fell asleep after 4:30AM, and woke at 7AM.  On the plus side, I read two books last night. :)


My hands are getting a bit tingly today, and a little red, but I took my B6, and keep putting a ton of lotion on 'em, as directed.


I am really, really weak today.  The walker is my friend, and I have to remember NOT to get up from a sit too quickly.  I got horribly dizzy once today; I'd rather not repeat that, thank you. ;)


So, I found some stats for my type of clinical trial on the internet, though it's the British Phase I and II Trial stats.  These are definitely the numbers my oncologist quoted to me when he was reading up on it. It made for interesting reading.  If you can get through the regimen, the results are damned good.  But less than 35% of the subjects can make it through six rounds before the toxicity becomes too much for them. They lost one patient before they could even start the trial.  Most of the six round patients have made it to 10 months of survival.  I am currently at 11 months myself. :)   It would be QUITE lovely to get another ... oh... 10-20-... 60(!) more months.  Yep, I am optimistic.


If you want to see what's up with this trial, here are the stats from the British Trials


I got to speak with my manager today and told him I was SO ready to come back to work.  I am scheduled to be back on October 18th if I can get the OK from my oncologist.  Happily I can telecommute most days, but I surely would love to spend at least one day a week at the plant.  Gosh, I miss everyone so much.


Hugs to all, and remember that every day is a gift.  Just look for the wrapping paper and bows; you'll find 'em if you look!

I am the Epitome of Compliance

I think I must be every doctor's dream patient.  I am compliant ... obsessively compliant.  I may be naive, but I figure if a doctor tells you to do something, you should do it.


For years, I monitored my breathing with a little contraption that measured peak expiratory flow and Forced Expiratory Volume in 1 second. (FeV1)  I had data out the wazoo, and trending charts back to 2003. :D  Ok, granted, that kind of fell by the wayside when I got this cancer, because it was all I could do to cope with THIS.


But now, I can obsess about new things, i.e. how much water I am drinking, getting those eight Xeloda tablets down every day, and the two B6 and the Turmeric (which are kinda hard to get down.  Stop making HUGE capsules, people!)  All these things I write down as I take them, keeping my date book by my bedside.  Yes, the glucose levels are recorded there as well, and I am happy to report that this morning I was down to 113.  The decadron has definitely left the building. :D


Oh, and the lotion and emollient thing!  According to the Patient Information sheet my oncologist gave me on Xeloda, I need to put an emollient on my hands and feet five to six times a day, and especially before bed.  I love the Emu oil, I have to say.  You use so little, yet it stretches one slight pump of the bottle to both hands and feet.  No scent, thank the gods, and it absorbs quickly.


One of the common side effects of Xeloda is mouth sores, so of course, you have to pay extreme attention to your dental hygiene.  Because I tend to get very dry mouthed from the chemo, I use a moisturizing mouthwash from Spry that contains Xylitol.  The Patient Information said that I should avoid Citrus fruits and juices, tobacco, and... NOOOOOOOOOOO!... spicy foods.  Dr. Fastenberg assured me that that part didn't apply to those of us of the latina persuasion.  If you grew up and grew and immune to it, eat it. ;)  Phew!  Dodged that bullet. 

In any event, today I feel pretty darned good.  I feel strong; much stronger than yesterday.  If I can get this chemo regimen through to completion, and it works to at least control this cancer, I will be so very happy.  


Here is Jane on a hunt for squash.  We put a basket up on the wall for the neighbors behind us and then she returns it empty with a sweet thank you note.  It's good to share. :)


Well, I'm taking each day as it comes, keeping on top of side effects as best I can and hoping this is the one that does the trick.


Love to all!

Xeloda with Dinner, Xeloda with Breakfast

Best not get confused with all the pills I'm taking...lol.  Especially after last night's lack of sleep, thanks to my old pal Decadron. :P

I started the Xeloda last night.  Took them over the course of my dinner, one at a time, since they are a little on the large size, but there was no problem.  Later, took my first B6 with my normal night time stuff:  Singulair, Protonix, Lipitor, Zantac, Magnesium and Iron.  That was fine.

This morning, I had my Muesli and took four more of the Xeloda, again, with plenty of water over the course of my meal.  Then it was time for Januvia and Glipizide, again thanks to my friend Decadron, which raised my glucose to 218!  Holy guacamole.  Then I started my Turmeric Caps.  These are a little bigger than the B6, but I got them down well enough.  Dr. F looked up the interaction potential of taking it and gave me the go-ahead.

I also asked him about Henna usage.  Check out this link for more information.  Dr. F said he's good with that. :)  Yes, my hands are feeling a bit warm, but my feet seem ok so far.  I'm using Dermasil mostly during the day, then night time I use the emu oil.  This is all so weird.  But I have a good feeling about this combo.  Well, let me clarify, I have good MENTAL feelings about this combo of chemo...the physical is not so great, but I shall persevere. :D

Can you believe we're still getting tomatoes in 110 degree weather and there are still tons on my plants?  Putting the shade cloth and the 4 inches of mulch really helped this year.   Ok, they are not beautiful, by any means, but damn(!), are they delicious!

Now, off to pay some bills, and then I think I'll try to take a nap.  I love you all, and send hugs and wishes for good health and happiness.

And We're Off!

I told Dr. F about the pain, and he said both were common referral pains from esophageal cancer.  He also said he's changed up my new chemo regimen.  Now, I shall be doing the Camptosar  every two weeks, and take the Xeloda pills for one week, with a week off.  This would be an easier regimen on me.


For my pre-meds, we have once again decadron, but now also atropine and zofran.  No more Herceptin, since it wasn't actually making inroads in the control of the cancer.  And it's not approved for use with Camptosar, anyway.


Atropine makes me a bit woozy, or at least I'm attributing my wooziness to it. :)  I just wish I didn't get so darned anxious about new chemos.  I mean, so far, so good on this one.


Here's a shot of Jane working on the most vicious jigsaw puzzle ever.  By the time we were done with my infusions, there was a volunteer and another chemo patient helping her.

Look at that concentration!


So, now I am home, and I was told to take my first four Xeloda pills with tonight's dinner.  Oh joy. :)


And that means, before I go to bed, I must slather on the emu oil onto both hands and feet.  I predict much sheet washing in my future.


Love to all!

It's Taxol Time

Another exciting round of chemo here today at Ironwood Cancer and Research Center.  I took a vacation day, because for me, it's almost impossible to try to flex around a six hour infusion.  I have oncolgy nurse Julie this day.  I've gotten past the four premeds:  Aloxi, Decadron, Benadryl and famotidine.  The Taxol is not even half way through and it's 12:04.  Ai carumba.

I talked to Dr. Fastenberg this morning, and he said my white counts are coming up fine enough that we still won't do the Neulasta.  So tomorrow evening, I'll start on the Naprosyn and try to mitigate the pain a bit.  Also, he said that taking the Benadryl would be fine, so I'll have my sisters get me some and start taking it on Wednesday night.

I told him about the ocular migraines and he said if they started up again, we'd have to do a brain scan.  Not that he thinks this could be a cancer problem, but we would still have to check it out.  Esophageal cancer does Metastasize into the brain.

Dr. F does have me scheduled for another round of this chemo on the 12th of July, but some time before that I am supposed to have my CT, chest and abdomen.  We need to have some good news.  I really need to have some good news.

We were just having a fun conversation with some of the other chemo inmates.  Two of them were originally from Ohio, so we talked about snow.

Well, I'm really tired, and not feeling up to snuff, so I'm done for this post.

Be well, all... HUGS!

Thursday, post-chemo

Well, it wasn’t as bad a Thursday as when I’d had the Neulasta shot, but it wasn’t a joyride, either.  I’ve got some bone pains, but nothing like the Thursday from hell.  I just don’t feel very well, and I’m finding it difficult to get the energy to get up from a sit.  I did sleep last night, though, more than the two hours of the night before. :)

The day following chemo, my glucose is whacked out because of the pre-med, Decadron, which is also responsible for the post-chemo insomnia.  Yesterday morning I tested at 178, so I took a glipizide with my regular Januvia.  This morning I was 111, so that’s a good thing.  Cancer treatments do make dealing with Diabetes a bit problematic but my PCP is doing a great job helping me through.

Didn’t feel like eating this morning, but since I have to take my docxycline and Januvia, I have to eat something.  I downed a Glucerna bar.  Well, that sounds like I made quick work of it, but it took me an hour to get it all down.

I found it a very wonderful thing to have to work with my numbers today, because they really can take me out of the misery.  I concentrate on the story they tell, make sure it’s the truth, double check, examine the logic.  I will not put out something with my name on it that isn’t right.

You know, the last round of chemo, which I had in November and December of last year, I didn’t have this total fall-out of my hair.  It was thinner, for sure, and there were patches of baldness, but nothing like this total desertion of follicles.  Is it weird that after the initial shock at the great gobs of falling locks, I really am ENJOYING being bald?  It certainly makes showers a lot faster!  Eyelashes falling out are just odd.  They get on my glasses, and I try to keep them out of my eyes.  Blech. :D

I saw the end of a documentary last night, “How to Die in Oregon.”   The portion I saw detailed a liver cancer patient making the choice to have physician-assisted suicide.  Oregon passed the Death With Dignity Act in 1994.  When my mom was dying, and more than ready to BE dead, I found it inhumane that she could not be ushered from this life in a caring, dignified, painless fashion.  I could give this gift to my aged cat, but not my aged parent, and for now, I can’t even give this gift to myself.  No, I’m not ready yet, by a long-shot, but when I am, at least I know that Hospice will be my best option in lieu of euthanasia.

Ok, I know this was kind of a bummer post, but I'm feeling kind of bummed out, not really emotionally, but physically just done in.  In fact, I think I'm going back to bed now that my work day is over.  You'll probably look at this and think "what time do you start work, anyway?"  Well, the answer is, I can't sleep past sunrise, ever, so, I start working at six in the morning, and I'm done by 2:30PM.  

Love to all, and don't worry, the first Thursday post-chemo is the hardest.  Tomorrow will be a little better, and then the next day, better, and better, and better. :)

May Flowers

The hydrangeas have survived two days in Arizona, although they were looking a little droopy this morning.  A quick application of water had them springing back in shape in no time.


I'm having to watch how I think.  Since my visit with Dr. F on Thursday, I've been catching myself thinking about things in the future, and then reminding myself that I may not be around for that.  I don't want to do this.  I just want to live today, and whatever happens or doesn't... that's fine.  There's no sliding bar hanging over me that says I'm going to die by a specific date and time.  And I'm just not going to be DYING until I actually die.  Until then, baby, I'm LIVING!  So it's just a matter of halting that time-schedule self talk and reprogramming myself back to now.  


Because seriously, what has changed?  Just because they found another cancer doesn't mean I can't control the esophageal AND the adrenal.  The only thing that HAS changed is that I have to do the nasty chemo again, and it'll be done in a few weeks, then I'll be back to 'normal,' until we have to do it again somewhere down the road.  As long as there IS a down the road, it's all golden. :)


I have to take a couple of Decadron tabs the day before, the day of, and the day after chemo.  Back to watching my glucose like a hawk. :D


But back on the flower front, we're seeing some sprouting of the dahlias and the crocosmias.  I can't wait!  Both of these make splendid cutting flowers.  I can have fresh flowers in the house for most of the summer and fall!!


Wendy got me to play a new game:  Deathspank.  Yes, it's a parody of action adventure type games a la Diablo II and Torchlight.  It's hilarious.  Reminds me of "George of the Jungle" type cartoons from my ill-spent youth. :D


Tomorrow it's back to work, telecommuting for a while, at least until this round of chemo is over.  I'll be susceptible to infection again, and anything else that would like to get a foot-hold on my body; like I don't have enough invaders on board. ;)


Tonight, we'll be having a grilled, marinated pork loin, rice and artichoke heart salad and some other veggie choice which shall be made closer to eating time.  Happy Mother's Day to all you breeders out there.  I miss my mother, but she had a good run for most of her life.


Love to all!

Ahh, the utter joy of FRIDAY!

I get almost giddy with excitement on Fridays.  Yes, I still have to go have my radiation treatment this afternoon, but then I get my beloved two days off!

Just got off the phone with my dear friend Dorothy, and we were remembering our friend Evelyn who was and actually still is one of my lifelong heroes.  She is my cancer role-model.  She met every challenge with grace, dignity, AMAZING humor, and strength.  Like all of us, she battled fears and learned to overcome them.  I draw a lot of my courage from memories of her.

I think much of my post-chemo blechhiness has yet to begin, because it's almost 9:30 AM and I'm still feeling pretty good.  Hey, I'll take it. ;)

Unfortunately, I did experience my post-chemo insomnia.  I'll blame that on the Decadron that's part of my pre-chemo meds.  I always get HORRIBLE insomnia when I'm on steroids.  I would have gotten up to grab a Xanax but it was cold last night, and I didn't want to get out of my warm bed. ;)  I can take a nap later, if I want.

Later, all.